Justin SkeesuckSpeaker and Booking Agent Information

When on stage, Skeesuck provides authentic and powerful storytelling, which gives insight into what it’s like to live life with a terminal, progressive neuromuscular disease. His experiences provide organizations with a much-needed perspective on how they can better serve those with disabilities. Addressing everything from etiquette to increased access, he empowers individuals and organizations to position themselves in a way that will increase their reach into the disabled community.

Skeesuck has been featured and interviewed on NBC, ABC, Fox & Friends, The Huffington Post, the Daily Mail, People.com and the MDA Telethon, and most recently gave a TEDx Talk.

Most recently, Skeesuck successfully completed The Way of St. James, more commonly known as the Camino de Santiago—a 500-mile epic pilgrimage across the vast terrain of northern Spain, in a specialized wheelchair. His lifelong best friend, Patrick Gray, along with many other friends, acquaintances and even strangers, pushed Justin for 34 days over mountains, through rivers and even across a desert called the Meseta.

Skeesuck’s journey began in his teenage years when a disease was unknowingly “triggered” after he survived a rollover car accident. At the age of 18, his condition worsened and required foot orthotics to aid him while walking. In his mid-20s, he began using a cane, then a walker and eventually a power wheelchair. By 2010, the disease rapidly progressed to his hands, arms and shoulders. It was at this point when life became immensely difficult for him.

Doctors were baffled for many years, and after extensive testing, Skeesuck was finally diagnosed with a rare progressive autoimmune/neuromuscular disease called Multifocal Acquired Motor Axonopathy or “MAMA” for short.

MAMA is similar in nature to how Lou Gehrig’s disease (ALS) progresses by selectively targeting muscles throughout the body, which for unknown reasons cease to function properly. As of today, the disease continues to greatly impact Skeesuck’s life, and as it progresses over time, he will require many adjustments to function daily.

Despite his limitations, Skeesuck has dedicated his life to traveling the world, working with organizations that are also passionate about helping the disabled community, and sharing his life experiences with those who will listen.